UNHEARD: Stories of Rare Disease in Maryland

01 The Numbers

1 in 10

This is home. Rare wears zebra stripes, black and white, so no one is asked to blend in.

That’s how many Americans live with a rare disease. In Maryland, thousands are waiting to be heard: neighbors, classmates, coworkers, most of them undiagnosed for years.

~6,000

known rare diseases, and a new one is described almost every week.

95%

of rare diseases have no FDA-approved treatment. For most families, the answer is “manage and wait.”

4 to 7 yrs

the average diagnostic odyssey: years of referrals, misdiagnoses, and being told it’s all in your head.

The Voices

Ten frames. One state. All rare.

A family on a neighborhood path, father in a power wheelchair, mother carrying a baby, a little girl holding his hand — Out in the neighborhoodMaryland

A father wearing a zebra-print scarf at a rare disease awareness walk, laughing with friends — The walk, every springMaryland

Black-and-white photograph of a family on the couch, parents holding their two children close — Sunday morning, at homeMaryland

A young man in a power wheelchair in cap and gown, holding his diploma high as confetti falls — Against every oddMaryland

A mother sorting a week of medication into pill boxes at the kitchen table, a full calendar beside her — Tuesday’s ritualMaryland

Two women seated together in a pink living room, holding hands and smiling — In it togetherMaryland

A crowd holding a zebra-striped Rare Disease Day banner reading February 28 in a town square — Rare Disease Day, Feb 28Maryland

A young girl smiling while signing her ABC — The good daysMaryland

A caregiver sitting on a porch at dusk, holding a warm mug under string lights — After the appointmentMaryland

An elderly man in a Sunday suit and hat speaking into a microphone at a rare disease research fundraiser — Hope for a cureMaryland

A glimpse into the communities that inspire this film.

02 The Film

A single empty chair in a Maryland field at dusk, lit by a warm spotlight under a dark sky

Waiting for a Breakthrough

A year of listening begins.

Unheard follows twenty Maryland families through one year of life with a rare disease: the waiting rooms, the kitchen-table, appointments schedule, the specialists three states away, and the fierce, ordinary joy that refuses to leave. No actors, no reenactments; just families letting the camera into the hardest and the most hopeful rooms of their lives.

The film travels the whole state: Baltimore City and Prince George’s County, out to Montgomery, Howard, Anne Arundel, and Charles counties, and across the Chesapeake Bay to the farms and watermen’s towns of the Eastern Shore. In every county the diagnosis is different, but the fight is the same: to be seen, to be believed, and to be treated.

Shooting across a full year, from first referrals to Rare Disease Day, Unheard will root a national crisis in one state's soil, because when a neighbor tells the story, it stops being a statistic. It becomes a face you know, a street you drive, a family you cannot look away from.

Join the Premiere List

Thank you. You’ll be the first to know when the lights go down.

Premieres February 28, 2028, Rare Disease Day.

03 Get Involved

01

Share Your Story

Live with a rare disease in Maryland, or love someone who does? We’re interviewing patients, caregivers, and clinicians now. Your name can stay private; your story doesn’t have to.

→ 02

Sponsor the Film

Hospitals, foundations, and local businesses: underwrite production, a screening tour, or the community premiere. Partner recognition where it matters most.

→ 03

Attend the Event

Join us at an upcoming rare disease event near you to connect, learn, share experiences, and help amplify the voices of patients, families, advocates, and communities.

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